My name is Linda Fenton-Mendenhall and I am 49 years old. My husband and I live on the north coast of Oregon. I was diagnosed with Ankylosing Spondylitis in 1992, at the age of 28. The first indication that something may have been wrong, was at the age of six or seven when I had severe leg pain after running. The pain would stop me in my tracks. My memories are very clear of hobbling around and dealing with the effects of sharp stabbing pains in my upper leg. Although my complaints were taken seriously, it was assumed to be growing pains. I understand completely that in the late 1960’s it would have been next to impossible to determine what was wrong.
Somehow, my symptoms eased for most of my teens and early twenties. I was very active in school and seemed to function without any problems. Fast forward to age 24… while practicing a dance routine for an upcoming performance, I landed on my right leg and was convinced that I had broken my hip. Although the pain was the worst I had ever experienced, it finally eased up enough to walk. I treated it like a sports injury and eventually it improved. At that time, I had no idea what inflammation felt like or why my hip joint had the feeling of being stabbed with a red hot poker. From that incident on, the same sensation became more frequent. I began limping and favoring the leg with the most pain until my muscle visibly reduced in size.
The pain seemed to increase with stress, over exertion, weather changes, sitting for long periods and sitting on hard surfaces. Since I wasn’t a big fan of going to the doctor at that time, I dealt with it as much as I could with Tylenol. It barely touched it. The breaking point was one day I froze like a statue, unable to move and pain radiating from my hip, down the back of my leg. I couldn’t walk forward, couldn’t sit down….just frozen in pain. My husband carried me to the car and straight to the emergency room. X-rays showed no broken bones, so I was given some pills and sent home. The next stop was a Physician that did take notice of my shrinking muscle but only prescribed pain pills. It didn’t take too long to realize that this was not something that was going to heal itself. So, back to another doctor and then another. I was finally referred to a muscle specialist, who ordered a biopsy, suspecting that it was a muscle disease. Of course the test came back fine and we moved on to yet another doctor. My symptoms at this point had spread to all of my ribs, tailbone and both hips. I had electrodes put on my legs to see if my nerves were the problem, along with countless other “maybe’s”. One doctor pulled my husband into the next room and asked him if I tend to make things up or exaggerate. He informed him that It was quite the opposite and we left, disgusted. Needless to say, we were beyond frustrated at this point. I think I stopped counting after about twelve doctors.
Finally, after four years of revolving doors, I was referred to a Rheumatologist. I named off every symptom and what life was like living with this unpredictable, painful and often scary problem. He listened carefully and said, “I’m fairly certain that I know what’s wrong with you and a blood test will confirm it.” He couldn’t believe that a blood test had not been done up to this point. By the end of the day, it was discovered that I was HLA-b27 positive for the gene carrying AS. This nightmare now had a name,…….Ankylosing Spondylitis. I studied it thoroughly after that day and found that I had many textbook symptoms. The biggest roadblock to getting the diagnosis was that it occurs mostly in men. Years went by without proper treatment and bone damage was done in the process. More education and less stereotyping would have saved me from an unnecessary surgery and several years of un-controlled pain.
After trying countless prescriptions, I have found one that seems to work for me. Fortunately, my AS is managed with only anti-inflammatory pills and no pain pills. The symptoms still flare up and new ones like; blurry vision, eye pain and inflammation have been added to the list. For the most part, it is manageable and was much worse in my 20’s and 30’s. I refused to let it slow me down and until I retired two years ago, I worked every day on my feet for more than twenty years ( most days in high heels ). I will continue to fight it every step of the way.
I have lived with this disease now for 24 years. Most friends and many relatives are unaware that I have it. This is mostly because I don’t want to be defined by it. It’s something I have but it’s not what I am. I decided to take part in this project to bring awareness to AS, so that hopefully, someone in the future won’t have to go through this long process of getting a proper diagnosis. I recently watched my Dad head down a similar road, in attempt to get a doctor to recognize that his symptoms were possibly AS related. Knowing the hereditary factors involved, doctors still hesitated to consider the possibility. It is now confirmed that he does indeed have it, along with my brother.
I can only hope that all those with AS can find ways to cope and get the support they need.
Oregon, United States of America